Support Teresa through ALS & ALS Research
Donation protected
*Merritt Spangler & Jessie Williams, are organizing this fundraiser in support of Teresa (mother to Merritt, aunt to Jessie), her medical needs, and her desire to help ALS researchers find effective treatments for ALS.
Dear Friends, Family, and Kind-hearted Supporters,
We started this GoFundMe page with heavy hearts but unwavering determination, united by a common cause that demands our attention, love, and support. We're reaching out to you in hopes of making a difference in the life of someone very dear to us – Teresa Spangler, who a few months ago received the devastating news that the severe deterioration of muscle strength she was experiencing was due to ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig’s Disease.
ALS is a relentless and unforgiving disease that affects the nervous system, robbing individuals of their ability to move, speak, and ultimately, breathe. Most people with ALS are given 2-5 years to live after their diagnosis, and there is no known cause or cure for the disease. Along with the physical loss, the emotional trauma on both the individual and their family are also extreme. ALS may have entered Teresa's life, but it will not define her spirit or the impact she has had on all of us.
Teresa has always been a pillar of strength, an inspiration to us all, and a source of unwavering support in times of need. Now, it's our turn to rally together and be the support she needs. This GoFundMe campaign has been created to alleviate some of the financial burdens associated with ALS, as well as support research in an effort to fight ALS, and ensure that Teresa's family can focus on what truly matters - maintaining her quality of life, her health, her family and continue to make many more memories.
ABOUT TERESA
WHERE DO WE EVEN BEGIN!? She is undoubtedly known as a trailblazer. Teresa is many things, from lead singer and guitarist in the Headless Chickens, to author, professor, mentor, founder & CEO, consultant, innovator, and kickass sales woman. But most of all she is a loving and caring mother, wife, sister, aunt and friend to so many of us. She has consistently put others needs above her own, and we can honestly say we have never seen Teresa ask for ANYTHING from ANYONE. Fueled by her relentless passion for making a significant impact, Teresa continually seeks to deploy her skills and creative ingenuity in projects that help lift others to their highest potential.
From Merritt: My mother is my absolute biggest inspiration in life. Her character and stoicism is something I aspire to live up to. Some of my earliest memories with her involve dancing in the living room of our home in Virginia to Crash Test Dummies, or eaves dropping on her conversations with her friends while she guided them through life altering decisions. Her spirit and soul rubbed off on me at an early age, and it is only because of her that I have dreamt so big in life.
For as long as I can remember she has pushed me to reach for the stars, and has been relentless in her pursuit to help me achieve everything I've ever dreamt of. Even if it involved signing a year long contract with a karate gym at the age of 7. Actually, she ultimately did not sign the contract in protest of the fact that no 7 year old could stick with one thing for that long. And it is because of actions like that, that I have become the intelligent business woman I am today.
I have very few memories of my mother being selfish, she has put my dad and I above herself countless times. She has been a supportive sister to 5 loving brothers. She has been the friend that so many people have leaned on for life guidance. And I am absolutely certain she will not let this diagnosis stop her from being exactly who she's always been, our biggest supporter. I would give absolutely anything to reverse her diagnosis, she is my person, and it goes without saying that her tremendous kindness is such an asset to this world.
From Jessie: In the tapestry of my life, Teresa is the golden thread, weaving strength, kindness, and dreams. From the sparkle of her fairytale wedding, where I was a flower girl, to the shared moments at family gatherings and adventures, she painted my world with love, curiosity, and infinite possibility. I cherish the memories of our frozen yogurt outings, especially the times when she was pregnant with Merritt. We strolled, dreaming together about our futures, forging a bond that time could never break. I have always wondered how one soul could encompass such depth.
When Merritt was born, I eagerly waited in the hospital, excited to meet my new buddy. I see so much of Teresa in Merritt. Their bond inspires me immensely as a mother! I mean…just wow!
Teresa's unwavering belief in me helped illuminate my path through even my most awkward phases. Let me tell you, there were MANY. Never once have I felt judged, compared, or incapable of achieving my goals with her by my side.
Her thrill for life, family, and experiences have inspired and shaped my perspective as an entrepreneur and especially a mother. Her boundless love, even amid her bustling roles, shaped me. With her gentle guidance, she has time and time again revealed that the answers were always within me, inspiring me to shoot for the moon. Now, as she faces her toughest journey, her eyes whisper assurance, reminding me that everything will be alright. I am profoundly honored to stand by her side, for she is not just an aunt; she is my blood, my mentor, the beating heart of my most favorite memories. ❤️
HOW WILL THE FUNDS BE USED
40% will go toward an ALL TERRAIN WHEELCHAIR, WHEELCHAIR ACCESSIBLE VEHICLE, WHEELCHAIR RENOVATIONS TO THE HOUSE
If you know Teresa you know she is not one to stay still and sit at home. Whether it was skiing in her early days at Appalachian University, or hiking El Camino de Santiago with Richard and friends, she has been highly active throughout her life. In an effort to maintain the ability to stay active with her family and friends we hope to get her a power chair that can handle rough terrain. With an all terrain wheelchair that has a high efficiency motor she'll be able to continue hikes alongside Richard, and visiting snowy ski destinations with Merritt.
In addition to the wheelchair, the family will need a wheelchair accessible vehicle, as well as many renovations done to their home in Boone. The house is three stories with many stairs and is not ADA accessible in its current state. While we have many family and friends who are handy and willing to help DIY renovations, the cost of retrofitting the house will be extensive.
Our biggest hope for Teresa is that she maintain a since of independence, and the ability to stay in her beautiful home, which she and Richard consider their favorite home they've ever purchased.
She has made it clear to us any equipment she does acquire will be donated to an ALS nonprofit after her use.
35% will go toward GIVING BACK TO SCIENTIFIC RESEARCH
Having lost both his father and uncle to ALS, Daniel L. Doctoroff founded Target ALS , a transformative biomedical research nonprofit, in 2013 to accelerate discovery of effective treatments for ALS. Daniel has been an early support to Teresa, and is friends with her doctor at Johns Hopkins ALS Clinic. The team at Target ALS is working to revolutionize ALS research by fostering unprecedented scientific collaboration between academia and the pharmaceutical/biotech industry. Teresa's wish is to support their efforts in finding effective treatments, and money is desperately needed for furthering ALS research.
20% will go toward MEDICAL EXPENSES NOT COVERED BY INSURANCE
Teresa is currently on one FDA approved medication that has been shown to slow the progression of ALS. That medication is covered by insurance, and we use GoodRX to get an even further discount. Her doctor recently prescribed Relyvrio, which alone is $4,000/month. Her insurance covers $9,000 of this medication, which is only about two months worth. There are a few ways we may be able to reduce the cost of this drug, but Teresa and family will no doubt accrue huge medical expenses.
According to a study published in the National Library of Medicine, over a 10-year period (2001-2010), all expenses related to the cost of care for an individual patient showed that total disease-duration costs were $1,433,992 (85% paid by insurance, 9% paid by family, 6% paid by charities). The highest costs were for in-home caregivers ($669,150), ventilation ($212,430) and hospital care ($114,558). From our understanding the average out-of-pocket cost for caring for a person with ALS could amount to $250,000 (according to ALS.org).
For now, these funds will be focused on getting Teresa on Relyvrio but we will update the GoFundMe as we figure out what will and will not be covered.
5% will go toward a BUCKET LIST TRIP & TRAVEL WITH FAMILY
Inspiring Teresa to compile a bucket list has proven to be quite the endeavor. Those who share a close bond with Teresa are well aware of her selfless nature, as she consistently places the desires and needs of others above her own. Even when it comes to crafting a bucket list, her unwavering altruism shines through. In response, her friends and family have taken it upon themselves to document the aspirations she has subtly expressed, turning her unspoken wishes into tangible dreams.
Motivated by Teresa's selflessness and her tendency to prioritize others, her loved ones have gone the extra mile to not only identify her unvoiced dreams but also to ensure they become a reality. Among the dreams she's shared, there's a collective effort to make a European river cruise experience a part of her bucket list. Join us in our determinations to honor her giving nature by granting her a memorable experience she truly deserves.
Thank you all in advance for your contributions, love, and support for Teresa and her family at this time. We will continue to keep you updated on Teresa's journey!
Sincerely,
Merritt & Jessie
Fundraising team (2)
Merritt Spangler
Organizer
Boone, NC
Teresa Spangler
Beneficiary
Jessie Williams
Team member